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Childhood cancer survivors experience a wide range of late-effects. As survival rates improve, follow-up in paediatric clinics becomes less feasible, and alternative models of care have been proposed. In this study, satisfaction among those attending a traditional paediatric late-effects clinic was compared with a multi-disciplinary clinic in an adult setting. Survivors (adult clinic n=93, paediatric clinic n=105, age 16-39 years) completed measures of symptoms, understanding of vulnerability to late-effects, purpose of follow-up, satisfaction and number of topics discussed. Predictors of satisfaction were: number of topics discussed, greater understanding of the purpose of follow-up and sex. Females, and those reporting longer waiting time were less satisfied. Aspects of clinic organisation, including shorter waiting times and opportunities to discuss health concerns, are more important in determining patient satisfaction than clinic type. Survivors' understanding of the purpose of follow-up is also integral in determining satisfaction.

Follow-up of survivors of childhood cancer is recommended to improve detection of late-effects, and provide individuals with information and advice. This study aimed to follow-up survivors of childhood cancer and report on their attitudes to current follow-up methods. Twenty-six survivors (13-25 years) of childhood cancer and their parent(s) attended focus groups (n = 7) to discuss views about follow-up care. Transcripts were analysed using interpretative phenomenological analysis (IPA). Three themes were identified: strategies to achieve a normal life (through playing down possibility of late-effects or careful monitoring of health); expectations about follow-up (facts and information, advice about self-care, everyday living, and psychosocial consequences) and preferences for different models of care. Given that some families had reservations about the benefits of follow-up, it is important that services address survivors' interests and meet their expectations. Changes to service delivery must take account of individual needs and expectations. Possible limitations of focus group methods (recruitment, bias reduction, methods of analysis and influence of other participants' views) are discussed.

To be useful in clinical trials, quality of life (QOL) measures must meet basic criteria related to psychometric properties (reliability, validity, and sensitivity), length and acceptability to patients, and availability of parallel child and proxy versions. This paper examines the adequacy of several current measures, with special reference to childhood cancer. We identified 10 such measures of varying length, age-appropriateness, and content. We also discerned a number of obstacles to inclusion of QOL measures in trials. These include clinician bias, financial cost, and time required to inform families and to obtain informed consent from parents. We noted some methodological difficulties associated with measuring QOL over time. These include allowing for maturation and accounting for response shift, or children's propensity to change their internal standards for assessing QOL.

The number of subjects that have successfully completed treatment for a cancer diagnosed during childhood and are entering adulthood is increasing over time. Members of the International Berlin-Frankfurt-Munster (I-BFM) Early and Late Toxicity Educational Committee (ELTEC) invited 45 paediatric cancer experts (representing oncologists, psychologists, nurses, epidemiologists, parents, and survivors) from 13 European countries (with five additional experts from North America) to Erice, Sicily (from October 27 to 29, 2006) to discuss the circumstances in which the word 'cure' should be used when speaking about children with cancer, and when and why continuing follow-up and care may be required. The objective of the gathering was to generate from the personal and professional experience of the participants an overview statement of the group's philosophy of cure and care of survivors of childhood cancer. The ten points reflect what the group considers essential in the survivors' cure and care.

Difficulties experienced by mothers caring for a child with cystic fibrosis were assessed. Difficulties were categorized as: (1) developmental, which included tasks generic to all families (bedtimes, socialization, siblings and communication with others); and (2) illness, which were especially pertinent to the care of the child with cystic fibrosis (mealtimes, physiotherapy and home-based medical care). Age differences were found in stresses associated with developmental routines, with mothers of younger children reporting more difficulties. With regard to illness routines, more difficulties were reported for children in better health (higher Shwachman scores). The data suggest that parents experience increasing difficulties in implementing home-based medical care where the child is in better health. Clinic staff need to be more aware of these difficulties and target information to parents appropriately.

This study investigates the psychological processes underlying established gender differences in physical and psychological symptom reporting. Adolescents (n = 548) from three age groups (13,14,15-years-old) were asked to complete measures of physical and psychological symptoms. They also completed a series of self-descriptions to assess feelings of competence, withdrawal, rejection, family support and social responsibility and a short self-esteem scale. Preliminary analyses confirmed previous findings, based on adult samples, of gender differences in the reported incidence of symptomatology, with girls reporting more symptoms than boys. However, gender differences were reduced substantially when self-reports of self-esteem, competence, withdrawal, rejection, family support and social responsibility were taken into account. Boys who reported more physical and psychological symptoms rated themselves to be less competent. However, there were no other differences between boys and girls. The analyses showed that symptom reports were mediated by adolescents' views about themselves, rather than directly associated with age or gender.

Pupils from three age groups (187 in year 7; 161 in year 8 and 200 in year 9) completed two separate measures of self-esteem. Children in years 7 and 8 completed the Self Perception Profile for Children (Harter, The Self-perception Profile for Children: Revision of the Perceived Competence Scale for Children , 1985) and those in year 9 the Self Perception Profile for Adolescents (Harter, The Self-perception Profile for Adolescents , 1988). We report reservations about the use of Harter's scales for British children, especially in that there was not a ready differentiation of overall self-esteem into specific domains as suggested by Harter. A small proportion of pupils experienced some difficulties in understanding the response format. The data are discussed in terms of the development of multidimensionality of self-esteem in childhood.

The diagnosis of a chronic disease poses many challenges for parents, their children and their relationship together. A child with a chronic disease is more dependent on parents, and often has less opportunity to participate in peer activities. Worries about the illness, experienced and anticipated pain, and the need for continual monitoring may set the child apart from peers and healthy siblings. While such a diagnosis is likely to be challenging at any age, it may be especially so during adolescence, when relationships are being negotiated and redefined. At a time when others are establishing their independence and asserting themselves in the wider environment, adolescents with chronic disease may find themselves in a situation of enforced dependency, often physically restricted compared with their peers and having to rely on parents for practical and emotional support. Much attention has been paid to concepts of ‘restriction’ and ‘overprotection’ [ 11. The transition to adolescence is difficult for all families, but appears to be even more so when compounded by the presence of serious illness. Chronic disease heightens parents’ concern and as a consequence, they may attempt to restrict the child’s activities and become more intrusive than parents of healthy children. For example, Walker et al. [2] reported that mothers with a child with cystic fibrosis experienced many difficulties, but that these became greater when the child reached adolescence. For parents, a particular difficulty may focus on separating concerns about the illness from more general issues which confront many families during this period. The following example is very typical of parents’ dilemmas: “She came out of school in a foul mood, and I said ‘What’s the matter? Have you not felt well today?’ And she got crosser and crosser and shut herself in her room and I really was worried and didn’t know whether to ring the hospital. And then that evening she talked about how she had invited a few people round for Friday night but now somconc else was having a huge party and had invited some of her friends to that (but not her) and she felt her party would be a washout. And then I felt I had been so stupid. I thought it was about the cancer but really it was about something at school and I just hadn’t been able to see that at all”. Discussion of the ways in which family relationships are affected by chronic or

This study investigates the responses of both mothers and fathers to childhood asthma, and the implications of parents' ratings of the severity of the condition for perceptions of the child and discipline practices. Young children (6 years and under) with asthma were divided into two groups according to the severity of their disease. A mild group (= 19) received treatment medication only and a moderately affected group (= 18) received prophylactic daily medication. Mothers and fathers differed in their ratings of how severely the child was affected. Neither did they agree about triggers which precipitated asthma attacks. There were few differences in terms of parental involvement or discipline practices as a function of severity. Children with moderate asthma were perceived to enjoy life more, were less difficult in certain situations and more affectionate than those with milder asthma. The results point to the need to understand the fathers' role in caring for a chronically sick child, and the implications of asthma for parents' perceptions of, and behavior toward the child.

Background & Aims This systematic review was conducted to identify the following: (1) generic and disease-specific measures used to assess health-related quality of life (HRQOL) in patients with hepatocellular carcinoma (HCC); (2) HRQOL in patients with HCC compared with those with chronic liver disease and the general population; (3) effects of treatment (liver surgery, hepatic artery transcatheter treatment, and radiotherapy) on HRQOL; (4) relationships between physical variables, symptoms, and HRQOL; (5) relationships between demographic characteristics, psychological variables, and HRQOL; and (6) effects of psychological interventions on HRQOL. Methods Computerized databases including British Nursing Index, Cumulative Index to Nursing and Allied Health Literature, Cochrane library, PsychoINFO, and Pubmed were searched. Results Thirty-six articles were identified. The results suggested the following. Four original articles described the development of standardized measures to assess liver cancer-specific HRQOL. Patients with HCC reported worse physical, emotional, and functional HRQOL, but better social/family HRQOL compared with the general population. HRQOL improved after liver surgery, hepatic artery transcatheter treatment, and radiotherapy. Better liver function, early stage of disease, and no recurrence were correlated positively with better HRQOL; and pain, fatigue, nausea, and performance status were associated with worse HRQOL. HRQOL was correlated negatively with depression, uncertainty, chance health locus of control, and positively with satisfaction with medical services. Psychosocial interventions may reduce negative feelings and enhance HRQOL. Conclusions Future work should explore the effects of psychological variables on HRQOL and the interaction between physical and psychological variables in relation to HRQOL.

It is a common task to give children a picture containing implicit depth cues and to require them to extract depth information from it. The cues are always selected from the adult repertoire; little is known about children's production of their own cues. In this experiment, 5- to 10-year-old children were required to draw one object behind another in a situation in which adults invariably produce the further object partially occluded by the nearer. The results were an age-related decline in the tendency to segregate the objects and an increase in the tendency to group the objects using partial occlusion, with a cross-over at 8 years. At all ages some children drew one object inside the boundary of the other. It is argued that the results are composed of two tendencies, a gradual mastery of discrete scaling phenomena (e.g., “up” on the page means “further”) within a given style, and a set of decisions to be made between incompatible styles.

32 children aged 7–8 years and 30 children aged 10–11 years were interviewed individually about their knowledge and beliefs about the physiological and social effects of smoking. Knowledge about the consequences of smoking in terms of vulnerability to disease and damage to the body increased with age but was high for both groups. Most striking was the increase with age in children's awareness that smoking could be used to control negative mood states rather than simply result in positive enjoyment. The data attest to much social, rather than purely cognitive learning, of beliefs about smoking among children.

Three groups of children (5–6, 7–8 and 9–10 years) were interviewed about their knowledge and attitudes towards hospitals. Children were asked what they thought happened in hospitals, why people were admitted and how they became better. They were also asked the worst and best things about being in hospital. The responses of the 5–6 year old group were very inadequate, but children's perceptions of hospital varied as a function of age. The results have implications both for preparing children prior to hospitalization and dealing with emergency admissions.